Adult Onset Epilepsy Group

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We all have many things in common by just having epilepsy, but being diagnosed as an adult has its own challenges. We may be grateful that we have not had this our whole lives, but it can be very disruptive when it starts in adulthood. Here we can discuss the challenges we face, the treatments we found helpful and how we as adults must advocate for ourselves.

Discussion Forum

I think that being diagnosed in adulthood presents a unique set of challenges. Am I the only one? I mean, I don't want to have arguments about who has it worse (we can't still be in this stage can…Continue

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As an being diagnosed out-of-the-blue, it was a big blow to me I know... I felt as if my whole life had changed as I went from being in control of alot of things (being a mom) to nothing. This happened on my 29th birthday and the doctors still can't figure me out they said?

I have for years tried to make sense of it and can't so don't spend to much time on trying to figure it out. You are right about the anxiety, I believe today that is my biggest issue is with anxiety. Today my body will do things that resemble a seizure, but I believe that they are anxiety and stress related. What we need to do is to watch for the signs in our life that bring about the anxiety or stress and eliminate them the best that we can. Then we need to continue to move forward with our life and journey that we are all on. Then we can enjoy our life the best that we can.

Thanks Alan, I appreciate you participating and your perspective! We are all unique, brains are super complex right? LOL

I'm just struggling and trying to make sense of it. And it doesn't. Honestly I think I'm less affected by seizures and more affected by anxiety over having them at all. I watched videos of seizures with my 15 year old daughter to find out what I look like. I found one and the girl is a toddler and I can see it in her face. I can't imagine that fear as a small child like that, it really broke my heart.

I think you are right about the sort of "crash" this brought for me though. I had my own car, house, I really felt like for the first time in my adult life I was finally free. I was working and back in school and enjoying my life and actually looking forward to a future. I'm very grateful to know that feeling, but I really miss it.

Hi Jasmine, I have had epilepsy all my life and you are right about epilepsy making us unique. I for one am glad I had epilepsy all my life. I was able to cope with my situation much easier as a child than if I was diagnosed when I was an adult. If you had your health all your life and now you have a disability that you need to cope with can be a very difficult task.

It is no different than if you have been given everything your whole life from your parents and all of a sudden that comes to an abrupt stop for whatever reason. In theory, If all of a sudden the flow of money that your parents were giving to you stopped, and now you need to go and get a job that you never prepared yourself for as an adult. That also would be a life changing event along with if you had your health and it is now taken away how could you or anyone prepare themselves for that?

To answer your question, we as epileptics are all unique and in my opinion. It is much easier to adjust to anything especially health problems such as a disability at a younger age before we get to comfortable with our life and then need to make a major change within our lifestyle. I am not saying it is any easier to have had epilepsy all my life. I am only saying that for me I believe it has been easier to cope with my situation. You now need to look at your life in a much more simple way depending on how your epilepsy is effecting you and take care of your health as we all need to. Keep your head up Things could be much worse than being diagnosed with epilepsy. You could have been diagnosed with a fatal disease that would for sure take your life.